“It has to be part of the clinic’s lived culture”- perspectives of next of kin on meaningful participation in psychiatric care: a participatory thematic analysis

Vollständiger Abstract

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Abstract Background The participation of next of kin in psychiatric care is widely recommended in clinical guidelines and research, as it has been associated with improved recovery outcomes and benefits for the wellbeing of next of kin themselves. However, many next of kin report limited opportunities for meaningful participation. Existing research has largely focused on barriers especially from the perspective of clinical professionals, while the perspectives of next of kin regarding what constitutes successful participation remain underexplored. Methods This participatory qualitative study was conducted as part of the „PazAng“ research project in Germany. Semi-structured interviews were conducted with 15 next of kin of persons in psychiatric treatment, followed by two focus groups with an additional 15 participants to deepen the findings (total N = 30). Data were analyzed using Reflexive Thematic Analysis. Data collection, coding and theme development were conducted collaboratively by a multidisciplinary research team including researchers with and without lived experience as next of kin. Results Three main themes were analyzed. First, participants emphasized the importance of a „network-conscious clinical culture“, in which next of kin are recognized as legitimate partners within the social network surrounding the person in treatment and proactively engaged by clinical staff. Second, participants described „different foci of participation“, including interventions supporting the person in treatment, relationship-focused formats, and support specifically addressing the wellbeing of next of kin. Third, participants highlighted „changing needs over time“, describing distinct phases such as an initial shock phase requiring orientation and support, a prolonged endurance phase, and critical transition periods such as discharge from inpatient care. Conclusions From the perspective of next of kin, meaningful participation in psychiatric care requires a supportive clinical culture that recognizes relational networks and changing needs over time. The findings suggest that participation is experienced as more meaningful when next of kin are acknowledged as partners, offered different forms of support, and considered across different phases of care. These findings highlight the importance of culturally and structurally integrating next-of-kin participation in routine psychiatric care. Clinical trial number Not applicable.